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Welcome To Crazy For Cody |
In late May of 2005, our dear little Cody was diagnosed with "infantile spasms" - a catastrophic epileptic syndrome that typically strikes babies between 4-7 months. He was given a 95% chance of retardation. He averaged 400 seizures a day for 8 months. Two days after Christmas of 2005, he became seizure free for 2 months. Now they're back and we are fighting to re-gain control. At almost 3 years of age, he is about an 8 month old cognitively and a 12 month old physically. This site is devoted to Cody and his heroic battle against this horrible syndrome. Will you join us in prayer for our little guy? He's the light of our lives and the most brave person we know. We live a chaotic, often desperate existence these days - but we know that if ANYONE can beat the odds, Cody CAN! Thanks for caring enough to come here and read this. We treasure the support, care and prayers of hundreds of people who stand shoulder to shoulder with us in this fight. We’d love to hear from you – click on “contact us” to send us an email.
"Forget the former things; do not dwell on the past. See, I am
doing a NEW thing! Now it springs up; do you not perceive it?
I am making a way in the desert and streams in the wasteland"
says the Lord. Isaiah 43:18-19
With love and profound thanks,
Shawna, Don, Casey and most of all Cody Graves
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Recent News
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Hi again! Sorry for the inability to access this website for a few days. My dear friends, the Arnolds, host this site as a ministry to our family and the server had some technical difficulties. Dave Arnold's business is www.churchhub.com if you ever want someone fantastic to design a website for you - or your business! He created this site and he is a neat Christian fellow.
So we are in full "sleep training" mode at our house! Thanks for all of your great ideas. The two I took to heart were putting the boys to bed earlier (altho they were going to bed at 7:30 (casey) and 8 (cody). But getting up at 5am still wasn't giving them enough sleep. A great sleep book talks about how (although it's counter intuitive)...kids sleep longer when they go to bed earlier. So we're trying that. So far, both boys still rise at 5am but I think it takes awhile to create new habits. The bummer is Don doesn't get home often until 7pm so that negates any time with the boys. But we'll give it a shot.
The other thing was a few of you mentioned leaving the boys in their sleep space even though they are awake - and not going to them to get them out of bed. This is impossible with Cody because he can't be left alone. He'll eye poke, bite himself, make himself throw up, etc. But for Casey it is possible. The two days I've tried it he simply screams non-stop - which he's always done when we try to get him to fall asleep on his own. This morning he cried for 45 minutes in his playpen (Don and I both went in to let him know we hadn't abandoned him) and then he pooped out and fell asleep from 6-7:30am. So I see that it can be done - IF I'm able and willing to let him cry it out. I'm not a big fan of crying it out - and normally wouldn't - but we just can't do the 5am get-ups anymore. Cody simply needs more sleep than that - especially since he doesn't nap anymore. And Cody often can't fall asleep till 10pm so it really leaves him with a sleep deficit to get up at 5am. So leaving Casey in his crib when he wakes up (with toys, a bottle and binkie) freed me up to go lay with Cody and bridge him back into sleep the few times he woke up from 5am on. For Cody, it's just a fact of life that he will need help getting back to sleep whenever he stirs. He simply isn't capable of putting himself back to sleep. His body has no sense of self-regulation. It has to do with his neurological problems - kids with neuro defects just don't sleep well. They don't fall asleep easily and they can't stay asleep easily. Their brains just don't talk to their bodies well. So even though Cody is dead tired, he will try to crawl to the door and come out to the playroom. All that to say - by letting Casey stay in bed and *hopefully* learn to put himself back to sleep in the early morning - it will at least allow me to go be with Cody and help him sleep a little later. I, of course, won't get any more sleep past 5am! But with Cody, Don and I have pretty much resigned ourselves to no sleep. We have tried melatonin, but it never worked for Cody. Our pediatrician suggested using benedryl on nights when Cody just can't fall asleep - he said many kids take it every single day for allergies and it can't cause any harm. I just don't like the idea of drugging him to sleep. But on nights when he's up till 10 or 11pm, we may give that a shot.
Tomorrow is a big fun day for me. I'm having 4 other moms from the area who have kids with infantile spasms over for lunch. I'm calling it a "mommy hero" lunch. I have no agenda other than to try to serve these amazing women who, like me, are walking the road of seizures with their children. It is a healing balm to talk to someone else who is in your shoes - and that's true for any trial we go through. For moms with kids who have seizures, there is a particular isolation you feel because so few people know that horror on a daily basis. So it will be nice for us 5 moms to come together and share our thoughts, fears, victories, and challenges. I can't imagine being in better company - especially on mother's day weekend. If I could, I'd fly them all to a spa somewhere and have them pampered (and me too!) for the weekend. But alas, in lieu of that I will at least give them something to eat and time to be able to be real about what we're all facing. I have big dreams -- and have prayed a lot over how the Lord could find a purpose for the pain of what we've been through with Cody. I knew my life was pretty isolated - I can't get out much and I don't have much time to serve. But I knew one thing I could do - I could take 2 hours and reach out to those who are going through seizures with their little ones. I am praying about how God might expand this ministry...and I can't even envision how since I am so strapped for time. But I'm sure He can find a way to make this ministry to other "seizures moms" bigger than my little lunch. At the least I hope us moms can meet every other month - and hopefully we can expand our roster as we hear of more women in the area dealing with infantile spasms. Perhaps there's a Bible Study in our future together? Or who knows. It doesn't have to be some "huge" thing....but I do want the experience I have with this illness to serve those who are just having their children diagnosed. I've thought of having Children's neurology dept. just hand out a little card to any mom whose child has just been diagnosed with i.s. saying that I'm available for a chat or support if they desire it. But again, having the time will always be my biggest obstacle. Perhaps this will always just be us four moms - or perhaps they wont' even want to continue meeting! But I know all I have to be is available for whatever God wants. He'll figure out all the details. Someday - when I'm out of the trenches of babies & toddlers and have a better grip on our life and the kids are older - I'd love to do more for other moms. Maybe a "special needs" ministry from our church. Or a "special needs" Bible Study. Or a respite day for parents of kids with seizures. I don't know. But I'm trying to dream big. For so long after Cody was diagnosed, I felt all my dreams die. I felt like I'd been given a life sentence of pain and sorrow. But as I emerge from that haze and am trying to begin living again...I am looking for ways to build new dreams. So we'll see where that takes me.
I've always been a big fan of pursuing dreams as far as you can. When I was in college, I dreamed of working at a television station. I got to do that as soon as I graduated. That fueled a new dream of wanting to move to Los Angeles and try to make it as an actress. I did that too. (Obviously) that didn't work out since you've never seen me in a movie or TV show! Although I have had many laughable small parts on soap operas (General Hospital, Young & Restless, Loving) and have done a bunch of commercials. I was even the "Taco Time" girl! Haha. I have a pretty funny reel of bad TV I've done! After hating Los Angeles and the acting lifestyle, I moved back to Seattle and decided the new revision of my dream was to try to do on-camera work as a reporter. Instead of acting, I liked the idea of being myself on camera. That dream came true and I was a TV reporter for years and years. I got to interview celebrities, travel all over, sky dive, bungee jump, fly with the Blue Angels. I even wound up anchoring the news!
So my whole life, I've been a big dreamer. All of my dreams didn't always come true, but it was the pursuit of them that mattered to me. And it was interesting watching my dreams change shape and form over the years. I'll never forget meeting Don and getting engaged. I was still on TV and was fantasizing about the awesome life I'd have. I'd still work - he'd rodeo - we'd have children and I'd "retire" till then were in school. On our wedding day our theme was "let the fairytale begin" - that's what I even put on all of our thank you cards. There was a photo of Don and I leaving the chapel surrounded by bubbles and applause and written above was "and they lived happily ever after."
And here I sit 5 years later. Making an entry on a website for my catastrophically ill baby boy. My dream now consists of trying to eek out a couple of hours every other month to build some kind of ministry with other special needs moms. My other dream is that one day I'll see my son healed, this side of Heaven. Crazy how dreams change. Crazy how you have to build dreams no matter what God allows in your life. He promises us a future and a hope. He promises abundant life. It may not look like what we planned. Or what we had once. I struggle every day with finding a new dream. And not hating that this is my life. But with God's help, I search for His new path - a path that doesn't involve TV, rodeos, or a fairytale. It involves, instead, making "beauty from ashes....strength from fear....gladness from mourning...peace from despair." That's in the Bible somewhere. And it's the supernatural transaction God promises. He'll give us beauty for ashes. Strength for fear. Gladness for mourning. Peace for despair. I count on that. And I nurture this little dream of mine that God will somehow redeem these years in the furnace of seizures and hospitals - and that He'll create something out of it that will help people - and glorify Him. If not, what's the point?
love,
Shawna
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Okay I have a bit of advice needed. You all were great when I had breastfeeding problems. Now we have sleep problems. Sleep issues have plagued us our whole lives...but this one is specific to "wake up" times. Both boys wake up at about 5am. It is driving me nuts. It makes for SUCH a long day - especially when Cody doesn't go to school till 8:15. By then he's already burned out. Casey takes naps during the day, but it's just such an early wake up for a non-morning person like me. We've tried keeping them up later at night and it just doesn't help. Casey goes to bed at 8:30p and still gets up at 5am! We've tried putting Cody down at 10pm consistently and he STILL gets up at 5am. It is murdering me.
Any thoughts on how to get kids to sleep later in the a.m.? I've covered both their windows to black out the room so the morning sun doesn't wake them. No help. I've tried depriving Casey of naps during the day so he's sleepier at night but he still pops up at 5am. I don't sense that it's hunger or wet diapers. They just seem to have body clocks for this time. HELP!!!! By the time we go to bed at night I feel like I've run a marathon!!
Thanks,
Shawna
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Already, God has brought me to higher ground. I got the following update from a church in Belize - the pastor and his wife are friends of mine and the church is a church plant from my home church, Calvary Chapel Eastside. This is a young couple with a young son - who felt called to move to Belize City and start a church. It is a tough place to live. This email made me realize how grateful I am for things like running water, safety, and health. It's so good to get perspective - and as usual - my own grief is lessened by realizing how fortunate I am. Shawna
"On a darker note, there seems to have been an increase in crime and violence lately. Last week Denise and Marika, one of the young ladies from church were out riding bikes and they were mugged. Two young men forced them off the road and tried to take Denise’s purse. Anyone who knows Denise knows that she isn’t one to be pushed around or intimidated easily. Denise resisted and struggled to keep hold of her purse. Marika joined in the struggle and one of the guys threw her down on the ground. He then punched her in the head and began to choke her. When it got to that point Denise threw away the bag to get the guy to leave Marika alone. The guys made off with her cell phone, purse and house keys. Both Denise are Marika are fine, but they were shaken up.
Last Wednesday night as we were finishing up our Midweek study, shots rang out right up the street from the church. We saw someone, either the targets or the shooters speeding away on their beach cruisers a few seconds later. After church Michelle and Barrow, two of the young people were walking home in the direction that the guys rode off in when gun shots rang out again. Barrow, the young man, told me that he heard the bullet whistle past his head. They had to lie on the ground for a few minutes until the shooting stopped. Several of the bullets entered Michelle’s aunt’s house and broke up the microwave and a cabinet. Just tonight we heard gunshots during our Men’s Ministry Meeting. As I was dropping off one of the guys, we heard that there was just another shooting outside his house. Life is getting harder and harder economically for the Belizean people, and the people are getting desperate and turning to crime and violence to make ends meet.
Belize has the highest rate of HIV/AIDS infections in Central America and the second highest in the Caribbean. We have several people in church who are infected, and statistically we likely have at least several more that I am unaware of.
Last week I found out that Cleanne, a very sweet little 11 year old girl in the church had contracted HIV. Her mother is also positive. The doctors say it was probably contracted through breast feeding before the mother new she was infected. The Mother also has several other children who have not been tested yet, one of which also breastfed. They are going to be tested this week. Please pray for a negative test result for the other kids. The situation is especially hard because the mother is a single mother of 5 and is unable to get a steady job due to the fact that she is sick often. At the moment, the whole family is living in a room they are renting underneath someone’s house, and they don’t even have running water. Please keep that family lifted up in your prayers. Pray for health for the family and that the Lord would provide for them financially.
The Lord is doing some wonderful things throughout the country of Belize, and the enemy wants to see it stop. So many people that I have been talking with have been under spiritual attack recently. Please continue to lift PLCC and the other ministries here in Belize up in prayer."
God Bless,
Joel, Denise and Elias
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Hello all. Wow I haven't written in awhile. You know, every once in awhile I get in a little funk. Something always triggers it. And I kind of go inward. No big deal. Just grappling with stuff. It happened on the way to school last week. I took a new route and drove right past an elementary school I'd never seen before. There were floods of little kids walking to school from a few blocks away. I saw a little boy Cody's size with a backpack strapped on him - threatening to tip him backward from the weight! He was so cute. I watched him run, jump, grab his brother's hand. He was laughing, yelling - doing all the stuff little boys do at that age. For some reason, on this particular day, it struck a raw nerve and flooded me with sorrow. Sorrow that still lingers like a wet blanket, unfortunately. Although I know the Lord has brought me a long long way in this grieving process over Cody's disabilities and health -- that grief process is interesting because it has a life of it's own. It folds over on top of itself sometimes and boom - you're back in the "depression" phase in the blink of an eye.
So yes, I will admit, I've felt depressed for the last week. I just have to get used to the idea that this is a marathon. I have to find a way to exist and find that abundance in life even with the stress and sadness of having a sick child. Each season of life brings a fresh wave of grief. And that's okay. And I'll be fine. It's just kind of exhausting, you know? Cody had a couple of bad seizure days last week which didn't help. I had to pick him up from school once. I walked in to see him passed out on a crash pad in the corner. I just never get used to the seizures. I'm sure I never will. And we continue to fight for his progress at school - which on top of his medical issues - is way too much stress.
In church today our pastor discussed the idea of Jesus saying "Come to Me you who are weary and heavy laden - and I will give you rest." He emphasized "Come to Me" -- saying that's really what He wants. He wants us to come to Him - hide in Him. It was a good reminder. When things get so heavy, I remember that He says "Come to Me" for a reason. He wants us to do it because it is right and true - and it is our only hope. I do find great comfort in the act of going to Him. As I confess my sadness - my desperation for Cody to be healed - and my confusion about why it is my son who is plagued with these horrid seizures and this sad life. So many people have healthy children. So many people don't have to give a thought to what it's going to be like when their retarded son is 6 feet tall and a grown man. Who will take care of him when we die? What will happen when puberty hits and testosterone kicks in? Will he always wear diapers? Will he ever be able to tell me he's thirsty? Or that he has a headache? Or will I always have to guess at everything? What will life look like when Don and I are in our 70's and Cody is in his 30's?
I took Cody to the park Friday because his seizures the day before made him too lethargic to go to school that day. But he was going stir crazy in the house so I took him to the park. He still has to go in the baby bucket swings - and his feet almost scrape the ground when he swings. He still loves it and giggles up a storm. But I stood there pushing him, watching the other healthy kids in the distance playing tag and other games. And I just couldn't stop the tears from coming. It's just sadness. No other word for it. I think even when you arrive at "acceptance" - the sadness still comes in waves at different times. Seeing Cody's string bean little skinny legs scrape the ground with his tip of his crocs - swinging in his pajamas because he'd been passed out from seizures all day - yet still managing his crooked little smile as I pushed him - was just too much for me to take in. It crushed me. And I continue to be crushed.
And - that's okay I guess. Unless God does intervene with a physical miracle in this lifetime, this will be my lot. I accept it, I do. But these times of sadness are really crippling, I'll be honest. I have so much to be grateful for - and that's what always pulls me out of these sad spells. But there's really no avoiding them - and that's just part of the life I've been given.
But gosh, if I could give my life tomorrow just to free Cody from seizures - I wouldn't think twice. Just when I think I can't take one more day of them, I wake up and manage to get through it. God has seen fit to give me this life. I don't understand why - and never will understand why my son. My son. What could he have been? Who could he have been? What relationship would I have known with him? So many questions. And the only answer is the constant reminder that he is exactly who God ordained him to be. Nothing more, nothing less.
And in my sadness, God beckons, "Come to Me" and there I find the strength to go on and search for that abudant life He promises.
love, Shawna
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I cannot believe how much I take my internet for granted. I spent the better part of last week on the phone to verizon - trying to fix the fact that I could no longer get internet. It took 3 days of phone calls - hours and hours and hours on the phone with these techinicians. And ultimately it was discovered that the "main office" had missed some number by a digit - and my internet was gone for a week. ARGH!!!
Lessons I learned - I can't be so reliant on the internet! I can't be so reliant on being able to email. The world will go on - even if my computer doesn't work. Good lessons. But oh was I hopping mad at these technicians!
So, I'm back. Other than that glitch, it was an average week for us. Some big seizure days for Cody - other really good days for Cody. We all have colds (me, Casey and Cody) so that's no fun. I was up all night with Casey last night cuz he had a stuffy nose and it was freaking him out. In 9 months, this is his first cold - so I feel lucky there! Cody's cold brought on lots of seizures. That was no fun.
Not much else to report...just hanging out. I can't breathe at the moment so I'm off to bed.
Happy Monday to all!
love, Shawna
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Words To Remember |
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O praying soul, be still, be still. He cannot break His promised Word; Sink down into His blessed will, And wait in patience on the Lord.
O waiting soul, be strong, be strong. And though He tarry, trust and wait; Doubt not, He will not wait too long. Fear not, He will not come too late! " --Streams in the Desert |
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